Calling all TNs
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I am also triple negative with the initial biopsy showing ER+ & PR+. Though after surgery (opted for bi-lateral mastectomy due to family history), it was found to be negative. Start chemo Wednesday, Taxotere/Cytoxan X4. Really scared of chemo.
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patty61..chemo is scary..just the word "chemo" is scary...I was freaking! The first one is the worst because you don't really know what will happen, how you will react...it is unknown territory..once you get through the first one (and you will)...you will know what is going on and how to plan for it...try to live as normally as you can...exercise a little if you can, eat what you want..take those anti nausea pills they give you at the first twinge...rest as often as you can..work if you can...I didn't do these things for my family and friends/coworkers..but for myself...it isn't easy..and it certainly isn't fun...but..it really is a short time out of your life...and we are here for you!
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A little humor for today. This is one of my favorite clips on UTube, where it went viral. Even if you've seen it before it always makes me laugh when I watch it. Enjoy!
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Angelisa, I'll gladly pray for you. I understand what you girls are going through. My heart ached as I supported my daughter through TN and I also understand as one who has been there receiving the chemo. ...I am filled with compasion for all of you and as I have become more familiar with your threads and bios. What you are facing is tough.
I never prayed more in my entire life than when my daughter was diagnosed. And then 2 years later I was diagnosed. The funny thing about my diagnosis was as I met others in the chemo ward at Dana-Farber I felt worse for them then I did for myself and my prayers were focused on them. And then I learned that very principal is spoken of in the Bible.
Blessings...
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Welcome to all the newbies! This thread has been so busy.
So this week I will have some stitches removed, get a bone scan, start physical therapy and start radiation. Will it ever end?
MBJ: Are those pies that you baked?
Heidi: I love that video!
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Hi all - just read through your thread and thought I would introduce myself. I was diagnosed last week (11/22/10). Have one enlarged node that they sampled and it was also positive. Found out today that I'm triple negative. Tumor is 3 cm with multiple smaller ones around it. I have a breast MRI scheduled for tomorrow and a PET for Wednesday so then will hopefully have a more clear picture of approximate stage. I am leaning towards neoadjuvant so understand that I won't get 'official' staging since they won't have all the nodes out prior to treatment - does that sound right?
This past week has been a roller-coaster of emotions like I could never have imagined. I have a 13-year old daughter and a 9-year old son. Told them this past week so they would have a little time to digest the news before they went back to school. They seem to be ok so far. My husband is not sleeping and is hugely stressed. I am just ready to get started DOING something. I haven't yet gotten in to see an oncologist - my surgeon is going to call the onc I hope to see and ask her to fit me in at her first available. How long did you guys have to wait to get started? Does anyone have info/articles on pros/cons of neoadjuvant vs. surgery first? I am under the impression that you have to wait to heal a bit after surgery before you can start chemo? Is that correct? I just feel like I want to start chemo now as I know it's in there and every twinge makes me think there's a met and they're growing - I'm usually pretty rationale but am having a hard time with all this.
Anyway - I'm sure I'll have tons of questions once I know the full extent. You all sound like you'll be a great support and resource.
Donna
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dlcw: Welcome, I am sorry you are going through this. I had neoadjuvant chemo. One benefit of neoadjuvant chemo is that you can see whether or not the chemo is working on your tumor. If it doesn't work, your doctor can change chemo medicines, or you can go on to surgery.
This is a stressful time for your family, I know. I think telling my kids was the hardest day I have had through all of this.
I hope you will find a lot of support on this board, especially this thread. I know I have.
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Welcome dlcw! I had surgery first, but my tumors were really small. I was dx on 4/30, had additional surgery on 5/4 to get clear margins and nodes (I had 10 removed). I didn't start chemo until 6/16. Enjoy the time you have with energy. Chemo took a lot of my energy, but I got through it, one treatment at at time!
I like the idea of a prayer walk. I find that I look at holidays (birthdays, Christmas) much more like milestones than I did previously. I asked my husband what we were doing last year and then remembered I had my implant exchange surgery in December. Who would have ever thought I would be dealing with BC this year?? I do get sad at Christmas caroles. I lost my dad 3 years ago after Christmas. Since then my sister was dx with BC and then me!
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dlcw: So sorry you have to go through this but I did neoadjuvent chemo Taxotere & Cytoxan 6 x and it greatly shrunk my tumors and made it safer and easier to remove my tumors. Although I didn't have lymph node involvement, they will probably want to stop the cancer as much as possible from spreading by doing chemo first. I would not be here if not for being able to have chemo first. They were very successful with my surgery.
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Yes! I baked those pies and ate them all too! LOL!
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dlcw, I had a clinical trial neoadjuvant chemo and it was brutal so I just had one. Then a biMX. That one treatment shrunk a fast growing 3.5cm and a 2cm tumor to less than 1MM ! The pathologist had to request more slide samples because they couldn't find anything but necrotic tissue. I had no node involvement, clear margins and since chemo was so toxic to me, I only had 3 A/C and had to call it quits.
I was in denial for a month, but once I got started, I was able to get in with the onc in about a week, the breast surgeon in 2 weeks and the ps in 3 weeks. They always waited a month after treatment for any surgery. Quick does not always mean the best. And remember, you can change onc anytime you want.
More unrequested advice....After having the MX, I would leave reconstruction/tissue expanders for after chemo. From what I read, you can jump into that anytime, right girls? I did them on top of one another to get it over with and it was a bad idea.
Best of luck to you!
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So if you have neoadjuvant chemo prior to surgery, does that mean you get chemo after surgery as well, or not necessarily? My surgeon is leaning toward chemo first. The tumor is about 4cm x 3cm and grade 3. ER/PR Negative waiting for a HER2 result.. (So I don't know if I'm TN yet) I have a large lymph node but she did a needle biopsy and it came back clear. Hopeful then that there is no node involvement.
dlcw I just want to start doing something too. I hate all this waiting around.
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dlcw: Sorry to see you here, but you've definitely come to the right place for support and info. To answer some of your questions.. my breast cancer was found on mammo early August, but I wasn't dx until Sept 3rd with stereotactic biopsy, and my bilat mx was Oct 7th. The waiting was horrendous and all kinds of thoughts went thru my mind too... was it spreading... was it going to lymph nodes... why can't they get me sooner... etc. I didn't have neoadjuvant therapy, but they do it with some people to shrink the tumor prior to surgery. The pros to this are that you'll know if you have a complete pathologic response, which gives you excellent prognosis. The cons are that by the time of surgery, you'll most likely not be able to tell if it went to any other lymph nodes because it tends to melt the cancer. I don't have any links to pros and cons as such, but I'm sure googling it would get you some info., and there may be other women who can answer this better than I. As for chemo, my surgery was Oct 7, and I just had my first chemo yesterday Nov. 29th. They told me they like to have you heal a little before chemo, about 4 weeks is the general rule I think. There are all kinds of mastectomy threads and chemo threads here, with all kinds of good info. Check into some of them and read some of the things each person has been through. Keep in mind, we are all different. The way you react to chemo and surgery will be different from anyone else, hopefully for the better. You'll have some things in common, and will find someone who has been down the same road you're on with whatever problem you might have, but you are an individual and so is your cancer. The waiting is the hardest, whether it's surgery or chemo. The emotions are unlike anything you've ever encountered and I don't think anyone can understand them unless they've been through it. Hang in there... you're running with a crowd you definitely fit into!
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99Sporty: Yes and no. Some people have both before and after... some only before... some only after. It really depends on a lot of factors that unfortunately none of us have the answers to until you're actually there. If you have a complete pathologic response, you may not need additional chemo. If you don't, then you might still need chemo...maybe a different combination or something. It depends on node status and a whole lot of stuff that you shouldn't worry about right now, because if you start thinking about it, you'll depress yourself even worse over probably nothing. I know... because I'm bad about doing that very thing.0
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Good job of explaining, Angelisa!
Like I wrote in my book the docs can know statistics and the odds but for the patient chemo is a "first" experience and some of us just like to mess up the minds of our docs by being different! That was my daughter's story. (She was TN. I was HER2/nue.)
I did have additional chemo after surgery even with 100% response and no live cancer in the path but then again I had a very different reason for that as a part of research.
Dawn, you have found a WONDERFUL group of ladies on this site. They are so supportive. I wish my daughter had found BCO five years ago when she was going through TN. That would have been so helpful. I felt like we were gropping around in the dark looking for answers, advise, and ladies who knew what we were going through and there was no one we could reach or find.
You ladies are beautiful!
Blessings from your "token" HER2/nue groupie!
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Kind of interesting, but no real surprises.
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Welcome, Donna! Sorry you have to be here, but since you do, this place is great with helps, tips and just support. I had neoadjuvant chemo (a clinical drug trial), then surgery, then rads. It's all very individualized though, so don't be nervous if your doctors suggest something different than someone else.
Amy, your stats are very close to mine, even down to the enlarged, but negative node!
After my surgery and final path report, my tumor came back very weakly responsive to estrogen, which is apparently unusual. My doc said BC tumors are usually either completely negative to ER/PR or are 70% or higher positive for ER/PR receptors. So, they've treated me as a TN (and I consider myself TN), but also want me to add 5 yrs of Tamoxifen onto the end of my treatment.
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Thanks everyone for the info and encouragement. I had my MRI today and it feels like a small step towards doing something so that was good. PET tomorrow at 8:00 and then I got an appointment with the onc I wanted to see on Friday so will hopefully have enough info to make a plan by then.
Got my hair cut today and made plans with her to get a buzz cut once it starts to go...I understand it takes a couple of weeks after chemo starts? Since I didn't need the usual root color touch up I saved some money (looking for the positives where ever I can find them!). Going hat shopping this weekend to get some soft warm caps. Anything else I should do to prep for chemo?
After all the reading I've done I'm pretty set on neoadjuvant, not so much for breast-sparing lumpectomy but b/c I really like the idea of knowing if it's responding to the chemo....I realize that it could still come back but I think I'd like to start out with knowledge that it's responding to whatever we choose. It seems like A/C followed by Taxol is a farily common way to go - MBJ - saw that you did Taxotare and Cytoxan - can I ask what factors your onc used to choose that combo? I also did some reading about cisplatin (sp?) - did anyone use that or is that drug not part of first round treatment? I'm sure I'll get info on Friday and I know I need to stop browsing the net and reading study results....but I come from a science and database background and I just like to know the numbers.....I also realize that at an individual level the statistic are either 0% or 100%. But....still I go there.
Anyway - thanks again for the info and I'll let you all know the PET results! Hoping for no glowing spots other than the 2 I already know about.
Donna
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Donna..sounds like you are getting prepared for chemo...yes..the hair starts to go a couple of weeks after your first treatment...you are smart to get it cut..I just let it fall out because I couldn't stand get it buzzed..we are still dealing with drain problems...but..I wanted to do it MY WAY...
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Oh..and MJB..those pies look wonderful..I'm glad you ate them all!
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Preparing for chemo... well, there are things you'll need... stool softener, maybe claritan, maybe prunes, gatorade or something that tastes good besides water, tea tree oil perhaps for finger/toe nails, a good rinse for your mouth in case you get sores, tissues, good facial cleaner and lotion, try to go to the Look Good, Feel Better class hosted by the American Cancer Society, Imodium in case you get the runs, a free "it's a wrap" from fraceluxe.com, and then there's the vitamins... D3 definitely a must. I ran these by my onc and she said I could take them all, but I still wonder... Omega 3 oil, Vit B6, Vit E, multivitamin, Biotin, Baby Aspirin. You can use ice chips to suck on while Taxol is being delivered to help avoid mouth sores, as well as putting fingers/toes in ice to help avoid neuropathy. Drink LOTS of water the day before, of and actually just drink it like a fish the whole time. I know I'm forgetting some tips so the others will come along with those.
Hair, from what I've heard, comes out usually around day 14. I'm not there yet. I'm also on 4 rounds of TC. The Adriamycin is, from what I was told, more for node positive. My research led me to believe I would want 4 dose dense rounds of AC every 2 weeks, followed by dose dense taxane (and I think 12 weekly doses was recommended instead of biweekly). That's an aggressive treatment plan. I read up on Carboplatin and I think it's the same general principal as Cisplatin... used more for those with mets. However, my onc said I could do Carboplatin if I really wanted to. It's been recently shown to work well with triple negative, but mainly studied in later stages so they don't know the long term as well as Cytoxan, which seems to be used much more frequently. If you're in doubt about anything, get a second opinion!! My onc felt that Adriamycin was not needed for my very early triple negative of 3 mm with no nodes involved, nor did she believe I needed dose dense treatments. But, even at only 3 mm, they wanted to offer me something because no one knows who will be the one person who should have gotten chemo to avoid recurrence. My second opinion retested my tissues and agreed with the plan of treatment. I didn't have any PET scan, only a breast MRI, and a CT scan recently for an unrelated issue both with and without contrast. Treatments are so individual, and oncologists often have a different idea of what a person should have. Sounds like you're on the right track though. Get a list of questions together for your onc as you research online. Make sure you trust your onc, and listen closely to what they say in terms of why they're recommending one treatment over another. Take a small digital recorder with you if necessary because it's hard to remember everything.
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"Take a small digital recorder with you if necessary because it's hard to remember everything."
Oh yes, 'chemo brain'! Write everything down or record it or have someone else do it, because your short-term memory may be mush. Some chemo drugs are usually accompanied by steroids to reduce side-effects, but know that the steroids may make you wired and interfere with your sleep. Don't be surprised if you have trouble writing, or if your typing here has a lot of typos, as "micro-tremors" are also a side effect of steroids that will go away after you quit taking them.
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Hi everyone, Just found out 11-19 that I had BC..Today i had my first appt. with my oncon. She was great and gave me lots of information.. Im TN and my genetics test came back negative..I have an appt at UNC next wednesday...Can anyone explain more about what TN means? I understand that its a more aggressive cancer, but not much else...Dr. Mack was leaning towards surgery first and then Chemo...Also she mentioned that I should plan on taking 12 weeks medical leave since im a elementary special education teacher...(stay away from germs).. is this normal? What should i be expecting with the chemo? I know it is individualized, but how do i know what the standard is? what meds will be used? anyone do clinical trial?
I have 2 boys ages 6 and 4.. Stressing about the affects of this on them...my husband and I have told them, but i worry that when they see me getting sick, sleeping all the time, etc it will affect them? any special readings for them? Wow! so much to process! thanks in advance...can't wait to keep reading to help get a better understanding of TN!
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Most breast cancer tumors have hormone receptors that let them 'feed' on estrogen, progesterone, etc. They've developed drugs that either keep your body from producing those or drugs that interfere with the tumor being able to feed on them. We triple negatives don't have receptors for any known hormone or substance, so they can't block them to keep TN from coming back. And TN tumors are overwhelmingly Grade 3, the most aggressive type, and are more prone to recurring, and recurring faster, than hormone receptor positive cancers. The good news is that if we make it past that 2 to 3 years 'hump', our odds of recurring fall very quickly and by 5 years or so, are even or better than the hormone positives.
ETA: I work in a hospital, so had to stop working due to the germs + weak immune system. If you can take the time off, I'd do it. It makes things a little easier with one less BIG thing to worry about (your job).
ETA2: Also, TN tumors really seem to 'suck up' chemo, and so usually respond very dramatically (in a good way!) to chemo.
I hope I haven't scared the living daylights out of you - I didn't mean to! There are pros and cons to TN, and the pros are very pro and the cons are very con, if that makes any sense. I try to focus on the positives of TN.
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Melissa: I worked throughout, just taking off days here and there when I felt I needed, but I do not work out in the public. I did go to a dog show and interacted with co-workers and friends. Don't assume you'll be sleeping all the time. Accept any and all help that's offered, and let friends/neighbors know how they can help. People who care about you will want to pitch in,
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Thank you Angelisa and riley702 - I have my shopping list and will swing by Target tomorrow after my PET. Angelisa - I am definitely node positive so perhaps the A/C will be the way to go.
Melissa - we are just days apart in the process - will you get node info post-surgery? Not sure how it works if the nodes are not obvious (like mine was). I started looking into surgery/reconstruction options and became so overwhelmed that I decided to just focus on chemo for now. One thing at a time....
Titan - I love that you had the guts to do the hair your way - too bad about the plumbing though.
Thanks again all - I love this forum already as there's SOOO much knowledge here!
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Amount of time off from work really depends on the amount and type of side effects, I was lucky to respond well to chemo with no side effects, I was able to work same day of treatment (abraxane) the first time around, 2nd time around I took the whole day off and played video games. I actually got sick just thinking about having Chemo, but not after receiving the treatment, I know I'm a little backwards.
My onc never told me I had to take any specific amount of time off, and I deal with over 400 athletes on a daily basis, the athletes would avoid the equipment room if they were sick.
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thanks everyone...glad to have you here!
riley702-any information is good...thanks! I think my oncon explained most of this but don't really remember...my hubby probably does..lol I probably need to take a recorder next time!
I'm sort of holding out on making the definite plans on the 12 weeks until i talk with UNC..Fortunately i have a great principal who has already worked with me and will continue...Hopefully they will give me lots more information on the types of chemo i will take...I want to be super woman and not need anytime off!! That's my goal..lol
Im not sure about nodes at this point.. surgery will be first with the SNB and that will determine the rest (i assume) I know that one node had a FNB and it came back neg, but was told today that 2 nodes are bigger...urrg...its really hard waiting..i just want surgery so everything else can fall into place. i like plans...its hard not having one
I plan on having recon, but not sure when...
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Donna: It looks as if you have already received some really good advice. I asked my Onc why I wasn't getting the Adriamycin and why we were doing once every 3 weeks instead of two and he just told me he felt it was a really harsh way to go for my case and he didn't feel it was necessary. Know that many here on the West Coast have found that doing lower doses of less harsh chemo have just as good of an effect as stronger, dose dense chemo. Although my tumors didn't completely shrink, when taken out,the biopsy showed they were completely made up of dead cancer cells and chemo was 100% effective. Taxotere/cytoxan is standard of care at many of the larger hospitals in Southern California but not all. I hope this answers your question. I was terrified of chemo but after the first one, I was no longer scared, I just wanted to get through it.
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Melissa - If you haven't found them yet, I recommend the various threads here for people going through the same treatments (chemo, radiation, surgery) the same month as you. I found the tips for knowing what to expect, reducing side effects, etc. very helpful
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